A mother told me that her one-year-old daughter had been diagnosed with dementia. She took her daughter to the doctor to have her limp checked out.
Abbe Baker first noticed the limp while playing with Bella in a park near their home in Gympie, northeast of the Sunshine Coast, on June 25.
Mrs Baker and her husband Joshua took the girl to Gympie Hospital for x-rays, which showed no signs of fractures or sprains.
Doctors urged them to take Bella to Sunshine Coast University Hospital for further tests, but they were warned she would likely not get through the emergency department until the next day.
The parents decided to keep her home overnight and see how she would feel the next morning. Unfortunately, Bella turned out to be in much worse shape.
She started limping more and more and began to lose strength in the left side of her body, and she also suffered from painful muscle cramps.
Mr and Mrs Baker rushed Bella to Sunshine Coast Hospital, where neurologists quickly admitted her to the ward to monitor her for the next 24 hours.
They thought the baby was suffering from a viral infection that was affecting her nervous system and that she would recover quickly, but her health continued to deteriorate.
A young family is in turmoil after it emerged that their daughter Bella (right) is likely suffering from childhood dementia, one of 100 conditions with a 100 percent mortality rate
Bella underwent MRIs, blood tests, a spinal tap, and genetic and metabolic tests at the hospital to find out what was causing the stroke-like symptoms.
None of the tests came back positive, while Bella’s strength continued to decline and she was forced to eat through a feeding tube, in what Mrs Baker described as ‘horrific’.
Within two weeks, the ‘social butterfly’ could no longer speak and was a shadow of her former self.
“She was very smart, she could make five-word sentences when she was one year old,” Baker told Daily Mail Australia.
‘She is a social animal, but she still enjoys having other small children around her.
‘Bella can really only watch TV. We read her books, but that’s about all she can do now.’
They suspected she might have Segawa syndrome, a rare neurotransmitter disorder that leads to low dopamine levels, so they sought help from a family in Western Australia whose child had the condition.
They referred her to a local doctor who specialized in the area and with the help of Mr. Baker’s parents, the family was able to fly across the country to see her.
The doctor immediately told them that Bella did not have Segawa syndrome, but that she most likely suffered from one of the more than 100 conditions that cause dementia in children.
“The doctor said she definitely has a neurological regressive disorder, which is basically another term for dementia,” Baker said.
Bella’s parents first realized something was wrong when they noticed her limping, but she quickly lost the ability to lift her arms, walk or swallow over the next two weeks (pictured, left)
Because Bella had to test on a smaller scale, she underwent another series of intensive tests to determine what type of dementia she had.
The results will be announced in November, leaving parents with the difficult task of exploring palliative care options.
The sudden outbreak of the serious disease has ‘completely changed’ the young family’s life.
“We have to sell our house and move back to the Sunshine Coast, closer to the hospital, because every time she gets sick, she goes downhill very quickly,” Baker said.
‘It’s so hard because we’re an hour away from the hospital and Bella can’t sit in the car without screaming.
‘She screams because the position of the car seat makes her dystonia terrible, her whole body stiffens and she just gets spasms.’
The mother said with sadness that she was living in a “living hell” and had become accustomed to her daughter’s problems.
“The fact that we had to sedate ourselves because our child was in pain is just horrible,” Baker said.
‘I used to cry over her blood tests, but now I’m so immune to it because she’s in pain 24/7. It’s non-stop.’
A GoFundMe was launched to support the Baker family through Bella’s health journey. In just under a week, over $13,000 has been raised.
The Baker family (pictured) waited months and underwent more than 10 tests before a doctor said Bella “likely” had the fairly rare disease
Gail Hilton, head of projects for the Childhood Dementia Initiative, said the Bakers’ story of late diagnosis is all too familiar to the families they help.
“Almost every family talks about the diagnostic odyssey. In some families it takes up to three years,” Hilton said.
“The delay means there is a delay in clinical trials and support. It is a big problem for this group.”
She said a lack of education and funding about the conditions leaves much of the population and even health care professionals unaware of what to look for.
While approximately 90 children die from childhood dementia each year in Australia, which is comparable to the mortality rate from childhood cancer.
However, for childhood cancer the survival rate is 84 percent, while for childhood dementia it is zero.
It is diagnosed in about one in 2,900 children, about the same frequency as cystic fibrosis.
“Every child and their family is being told their lifespan is going to be shorter,” Hilton said.
The Childhood Dementia Initiative is campaigning for more funding for more extensive research into treatments and care. The results so far seem promising.